Raising Resilient Kids in the face of chronic illness
Michelle MacPhee
D-Mom, M.S. (Psychology)
My son was diagnosed with type 1 diabetes at the age of 14 months. By the time he is the age that I am now, he will have been living with the diabetes dragon for over 378,880 hours. That’s a lot of hours for the dragon to wear him down. By comparison, so far I have lived a mere 62,000 hours with diabetes in our family, and yet that’s been plenty — some days I reach for the strength to cope and come up short.
And so I worry about him: when I’m no longer there on a day-to-day basis to cheer him on, how will he cope with the challenges of diabetes? When I’ve morphed from “Mommy” into “Mom”, will he have the strength to deal with the unending demands? How can I prepare him now to rebound from future down days, so that diabetes doesn’t keep him down for good?
I received the gift of guidance recently when I heard Dr. Greg Schoepp (Registered Psychologist, University of Alberta and Stollery Children’s Hospital in Edmonton, Alberta) speak about fostering resilience in the face of chronic illness. The first thing that I wanted to know was: what exactly is meant by “resilience”?
Dr. Schoepp paraphrased clinical psychologist and author Robert Brooks in defining resilience as:
- dealing effectively with pressure and stress
- coping with everyday challenges
- rebounding from mistakes, disappointments, adversity
- creating realistic expectations and solving problems
- interacting comfortably with others
- treating others and oneself with dignity and respect
To give you a picture of what that looks like, a person with a resilient mindset recognizes his own strengths and sees himself as competent. He is able to set realistic expectations and views his mistakes as learning opportunities, rather than setting up self-defeating goals and behaviours. He is able to ask for help and support when he needs it. He realizes where he has control versus where he does not, and focuses his time and attention on the things he can control.
Wow. When I grow up, I want to be resilient!
Now I know that there are at least a few of you out there thinking: “That’s great if you’re blessed with a resilient personality at birth, however, the rest of us will just have to settle for self-doubt and self-defeat.” But the good news is: there’s hope for the rest of us. Research has shown that we can learn to cope more effectively with adversity; resilience can be learned.
This is where we, as parents (or aunts, uncles, grandparents, family friends) come in. The essential factor in helping children become more resilient is the involvement of a loving, nurturing adult who values and respects the child1. In other words, what a kid needs most is one grown-up who cares about, looks after and loves her. Great, I can check off that box. But what do I do to show her she is loved and cared for?
Goldstein and Brooks2 give us some practical to-do’s regarding the power of parenting to promote resilience:
1. Be empathic.
Empathy (understanding, identifying with, sharing another person’s experience and feelings) is the foundation of any relationship. The quality of the relationship improves when you put yourself in the other person’s emotional shoes, when you connect with him on an emotional level, when you show him that you understand what he’s feeling by saying things like, “That must be really frustrating.”
To put yourself in your child’s shoes emotionally, ask yourself:
- How would I feel if someone said or did to me what I just said or did to my child?
2. Communicate effectively & listen actively.
Consider the following scenario: supper is late because traffic was bad, everyone’s hungry and rushing around to get the meal on the table. Your child has recently learned to count carbs on her own, so you tell her that supper’s almost ready, she should calculate the carbs and bolus for the meal. Instead of grabbing a pencil and paper, she shouts, “I hate diabetes!”
Your parenting style impacts how you are likely to respond in a situation like this. If you have an authoritarian style, you strive for control, expect obedience without question, and feel that it’s your child’s job to listen to you, not the other way around. You may say something like, “Complaining doesn’t help, just count the carbs and get on with it.”
At the other extreme, if you have a permissive parenting style, you have little control, few expectations for her behaviour, and may listen without leading and guiding. (“I know what you mean, it’s frustrating to always have to count carbs, so if you want you can skip it tonight.”)
An authoritative parent gives their child an opportunity to vent (“I don’t want to have to count carbs all the time! It’s too hard! I hate diabetes!”) without jumping immediately to solving the problem (“Just open the Figwee app”) or glossing over your child’s feelings (“It’s no big deal, it only takes an extra 30 seconds to add up the carbs”). Instead, if your parenting style is authoritative, you take time to listen to her, and to let her know that her feelings are valid. You may say something like, “I know what you mean, it’s frustrating to always have to count carbs…” while still expecting her to do what needs to be done (“…but since your insulin dose relies on knowing the carbs, we have to do it. Let’s figure it out together.”) The middle ground of authoritative parenting involves warmth and connection, while having clear, reasonable standards for your child’s behaviour; it involves listening to your child and validating her feelings.
Ask yourself:
- How much am I truly listening to and validating what my child is saying?
3. Discipline (teach) in ways that promote self-discipline and self-worth.
This is one of the most important roles for a parent in terms of nurturing resilience.
Positive discipline means that as caregivers we:
- Create a safe environment for our kids
- Reinforce self-control
- Practice prevention
- Be consistent, not rigid
- Select our battles carefully
- Rely on natural and logical consequences when possible
- Provide positive feedback and encouragement (as these are the most powerful forms of teaching new behaviours)
It’s tempting at times to discipline our kids for other behaviours, but to let them off the hook when it comes to diabetes. It’s tempting to have consequences for not doing his homework, but skip over the fact that he’s not checking his blood sugar before he eats. After all, it’s unfair that he has to do things other kids don’t have to do, so in a way it makes sense to even the playing field by having low or no expectations for diabetes self-care. However, when we have lower expectations around diabetes, or when we do it all for him, what does that communicate to him? In effect we’re saying: “I don’t think you can handle this, diabetes is too hard to face head-on, and mistakes means failure, so rather than dealing with the pressure of diabetes it’s better just to avoid it.” But if we want to foster resilience in our kids, it’s important that we apply the above parenting habits as much to diabetes tasks as we do to other behaviours.
4. Love your child in ways that help them feel appreciated.
Some children feel loved by the supportive, kind words that you say; some feel loved through the things you do for and with them. It’s worth considering how your child feels loved, and then acting on that within your family. The same is true for D-siblings: a one-on-one activity (that doesn’t revolve around diabetes) lets them know that they’re loved and that they matter, too, even though the medical needs of their sibling may have to take priority at other times.
Ask yourself:
- Is my child a stronger person because of the things I said to them?
5. Help your child set realistic expectations, solve problems, and make decisions.
To do this effectively, you need to know yourself, and know your child.
What are your strengths? In what areas could you use some help? For example, if organization is not one of your talents, then seek out the support of someone who is strong in this area to organize the diabetes supplies.
What are your child’s strengths? Encourage her to ask for help when she needs it. Consider your child’s temperament when deciding what’s realistic. Does she tend to be easy-going or does she crave routine? The goals and timelines will look different for a risk-taker than for a child who is a little cautious, which will also be different for a child who gets over-anxious.
6. Help your child realize mistakes are experiences from which to learn.
Ask yourself:
- When your child makes a mistake, what do you say and do?
Do you communicate in your words and tone that it’s okay to make mistakes? Do you blame yourself or give him an opportunity to own his choices? Do you tell him what he should learn or ask him to reflect on what he has learned? Do you dictate the solution or let him figure out how to correct the situation, with your support?
7. Help your child develop responsibility, compassion, and a social consciousness by providing opportunities to help.
Being able to help someone else is empowering; it makes us feel good about ourselves and our abilities; it teaches us about responsibility and about taking care of each other. At any age, in some way, every child can help people in the community, other students at school, family members. Including you.
Say to your child or teen, “I need your help.” Be specific and concrete about what she can do to help. (“I need your help to download your pump data.” “I need your help to do the laundry today.” “I need your help to deliver Christmas hampers to some less fortunate families in town.”)
In case you’re not yet convinced that you can actually make a difference in your child’s future level of resilience, note the conclusions of a recent study of the impact of type 1 diabetes on families: Moreira et al (2013)3 reveal that the best predictor of a child’s adjustment to a chronic illness is how the parents perceive the restrictions in their lives imposed by the illness and the level of helpfulness and support from family members. In short, as parents we set the tone; if we work together as a family, choosing to move past the limitations of diabetes, then our kids have their best chance at winning against the dragon. For 378,880 hours and beyond.
Parenting Resources / Books (recommended by Dr. Schoepp)
- Barkley, R. A. (2000). Taking charge of ADHD: The complete authoritative guide for parents. New York: Guilford Press.
- Barkley, R. A., & Robin, A. L. (2008). Your defiant teen: 10 steps to resolve conflict and rebuild your relationship. New York: Guilford Press.
- Brooks, R., & Goldstein, S. (2007). Raising a self-disciplined child: Help your child become more responsible, confident, and resilient. McGraw-Hill.
- Chansky, T. (2008). Freeing your child from negative thinking: Powerful, practical solutions to build a lifetime of resilience, flexibility , and happiness. Cambridge, MA: Da Capo Press.
- Rapee, R., Wignall, A., Spence, S., Cobham, V., & Lyneham, H. (2008). Helping Your Anxious Child: A step by step guide for parents (2nd ed). Oakland, CA: New Harbinger.
The above information was adapted with permission from a presentation by Dr. Greg Schoepp, “Fostering Resilience in the Face of Chronic Illness,” at the 2015 Kids ‘n’ Us Conference in Edmonton, Alberta, Canada. We are grateful for your collaboration, Dr. Schoepp!
References:
Goldstein, S., & Brooks, R. B. (2013). Handbook of Resilience in Children. New York: Springer.
Moreira, H., Frontini, R., Bullinger, M, & Canavarro, M. C. (2013), Caring for a Child with Type 1 Diabetes: Links Between Family Cohesion, Perceived Impact, and Parental Adjustment, Journal of Family Psychology, 27, 5, 731-42.
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